Nights are cold, days are warm. He feels the cold in the titanium and it spreads inside so he never feels warm. He has started reading again. I hope he starts a blog someday. It is all set up. One day it may just appear as a new category.
I am watching him read while he is in discomfort from stiffness. The room temp is set to 75 and he still has a blanket on. The cold is going to be rough.
November was a challenge. The first week he actually felt ok. He had good therapy sessions, hung out with his friends, enjoyed most of each day. Then it all went to shit.
It started with worsening gas/pressure. Neuropathy pain in his anus that made him feel like he needed a BM all the time. He sleeps 4 nights out of 7, the others awake by 4 am. I stumble in to start a TV program, then try to go back to sleep. Sometimes he dozes, often not. He is then grumpy.
By the second week we also had work to do on the van. I had arranged to bring it in on Veteran’s Day, a day off. Everything was set but the part did not make it in. Rescheduled for the 12th. Part did not make it in before 1 pm. Colin has therapy at 2. Was not happening on Tuesday either. So I made arrangements to take it in at lunch on Wed. I was late to our Tuesday meetings at school. I ran over a tarantula on the way down to town. I then got a call that the van battery was dead and he would not make it to therapy. By Wednesday the van was fixed but he was feeling badly. We now have battery cables in all vehicles and an extra pair for anyone else at the house who may need them.
Add to this the pharmacy was now giving us a hard time about some of his medications. He takes a Xanax to sleep at night. He takes Valium at low doses through the day to help with his muscle spasms. Apparently they are the same drug, but in different doses. That is the key. The stronger Xanax is for sleeping. The weaker Valium is to support the Baclofen. It took 3 phone calls, 2 weeks and a conversation about dosages with the pharmacist before we finally got them filled. Not until I asked how to split a little blue pill into eighths did he finally get what I was talking about. Where is the evidence of a lengthy education? Why am I giving him all the information and explanation when it should be the opposite? I am so tired of being treated like a drug addict trying to get around the system. I bet they don’t look at his records any more than a doctor scans them 30 seconds before doing a consult or evaluation.
After finally getting him his needed medications, prescribed by his doctors, we were able to work on the next problem. Constipation. I had changed to stool softener to something recommended. It was not helping. I tried to get him to drink Metamucil. That did not go well. I switched to fiber capsules. Still no progress. Eventually, after 2 weeks, I switched back to his original stool softener. It took a couple of days but he finally started moving his bowels more regularly.
His friend came mid month to take pictures (stills she called them) for his documentary. She spent the morning after his BMP documenting his morning routine. She would meet up with him again when she had them processed. He felt pretty good that day.
His father came to visit the weekend before Thanksgiving. They got along well and seemed to have a good time. By the time he left though, Colin’s urine was looking bad. Dark, large clumps of material. He had a slight fever Monday morning so I called the Urologist. He has an appointment with his Rehab doctor, went to that then cancelled his plans with a friend because he felt so bad. The following day his urine was much better, his fever gone. The Urologist nurse called back but seemed unconcerned and told us to keep him hydrated. Tuesday afternoon he felt so bad he skipped PT, cancelled another dinner with friends and came home. By Wednesday it was dark again, his catheter leaked on the way down to his Neurology appointment. I fixed him up so nothing wet was against his skin, then out a coat in his lap to hide his wet lap. His Neurology appointment is always good. She talked about self hypnosis, stimulation of the areas he cannot move and how pain is a good thing, even though it is really hard. He can now twitch his ring finger when he is warm and relaxed. She talks about physical therapy in the home. We tell her we are up for it if the insurance approves it. She says it never hurts to ask. Maybe we will get lucky and he can have someone come to the house to help with his PT at home.
By Thanksgiving, he has blood in his urine. He felt chills, weak and grumpy. We went to my In Laws home where there were tons of Family. 3 turkeys, 2 tri tip, ham, Salmon and many sides, pies and alcohol. I had Salmon and potatoes. Everything else had meat. Even the “veggie” lasagna. I learned that meant it had vegetables in with the meat. We came home, rested. Colin was sleeping by 10 having woken at 4:30. I had him in bed by 11.
Black Friday my husband and I ventured out to get some car maintenance done, pick up an Apple TV and go by the hardware store,. We also picked up a little 3 ft live Christmas tree with some lights for Colin’s room. He didn’t get one last year so he gets one this year.
His friend was visiting over night. First time in weeks he has felt up to hanging out. I put him to bed by 11, he was awake by 4 again. Once his friend went home we took our time with his BMP. I let him sleep/rest. He was up by 1, in the stander from 3:30 to 5:30 then I made dinner. His urine still has blood but we are keeping him hydrated. The doctor’s office is closed until Monday.
During this month I became even further behind on responding to emails, writing the endless thank you notes that I have every intention of doing, but never think if it till midnight when I am trying to sleep. The list of things to do grows longer. I must get an ad out to hire a new CG, A is moving in Jan. I need to schedule tree cutters, wood splitter, wood chipper, paperwork for the orthopedist he finally got an appointment with, time sheets for both CG, December work schedules, pay bills, replace Ian’s registration and tags because he lost them and got a ticket. That is all I can think of at this moment. I need a couple of clones. Many people have offered to come help, which we appreciate to no end. But the thought of having to show someone how to do things is more daunting than just doing it. Every second is accounted for, anything extra seems a burden beyond my ability to deal. It makes me feel bad, I just don’t have the time or energy. Nor do I get a chance to thank them all personally. If only there were 48 hours in a day, then I might catch up. Probably not.
Overall November was a challenge. He is still battling nerve pain every day, all the time. His bowels and bladder are giving him enough discomfort to keep him from enjoying plans with friends, keeping up with his therapy and exercises. We are making progress with his bowels, making an appointment for his bladder. Nerve pain will be a way of life for who knows how long, or even if it will ever go away.
It is so very difficult to watch him every day being in constant discomfort. I can do nothing except try to give him small moments of respite, brief chances to feel a little better. But never the chance to feel normal. His daily struggle breaks my heart, weakens my resolve to be strong. I feel older, weaker, stiffer than I have ever felt in my life. It is more than getting old. It is never resting, never feeling content or that things are caught up and finished. Always behind, always ineffective or inadequate in alleviating what makes him feel so bad. There seems no end.